Wednesday, January 5, 2011

New year, new beginnings.

Hello again everyone, I’m still here… As most of you know, I went in for surgery on the 7th of September to have my spleen removed. I intended to write MUCH sooner and to keep you all informed but, I was pretty nervous prior to the surgery and since then my brain has been in a real fog. I am told it’s a common side effect of the cocktail of drugs they used to knock me out for the surgery and then to control the pain afterwards. I’d like to crack some sort of joke about drugs but that stuff just ain’t funny!

Anywho, back to the spleen. The surgeons tried to remove it laparoscopically through three small incisions about ½-1 inch long through which they inserted various tools and cameras. At some point I’m told (remember, I was higher than Sputnik!) that the spleen started to roll onto their tools after some of the “disconnections” were made. This resulted in their tools and camera being hindered and holes were poked in the spleen as a result which then caused bleeding inside. Not cool… So, the decision was made to make a much larger incision and get it out quickly. Although this was not in the plan, they had warned me this would be a very real possibility due to the size of the spleen. And speaking of spleen size, a healthy spleen should be about the size of your fist and weigh in the neighborhood of ½ a pound. Mine was around 12 inches long and weighed over 15 pounds!!! Normally it’s tucked under the left side of the diaphragm, mine started there and extended all the way down into my pelvis. The spleen is an organ that creates lymphocytes for the destruction and recycling of old red-blood cells. The spleen is also a blood reservoir and is the location where white blood cells trap organisms. Given all that it’s not hard to figure out just where two units of blood a week were going…

Well, no matter anymore as the spleen is LONG gone! It was an amazing experience (and not just because of the drugs!) and I met some amazingly talented and compassionate people along the way. People like my surgeons Dr. Tedesco and Dr. Eisenberg, and RN Austin Balk in the ICU, that dude was super cool! It also showed me just how involved and caring my hematologist Dr. Martin is. She was not involved in the surgery itself but was monitoring me throughout the day and after the surgery she insisted that I be moved from the “step-down” unit, where one nurse (sorta) watches over 4-5 patients in a large room, to the ICU where I received round the clock care from people like Austin. It’s wonderful to know that when you can’t BE in control, there are caring compassionate people who can and WILL step in on your behalf.

So where does this leave me? Well for starters I was transfused one unit of blood post-op when I was discharged on the 14th of September. Since then I received two more units on November 2nd, nearly two months later! For those of you keeping track, that’s a dramatic improvement from two a week to two in almost 8 weeks. Hallelujah!!! It has also left me with a TON of energy and a renewed commitment to get out there and LIVE! The only thing really slowing me down is the loss of muscle that resulted from so much inactivity over the course of the past three years. Wow, three years… has it REALLY been almost three years? And to think that the first specialist I saw gave me only that long to live. I’m glad that he was wrong on THAT ONE!!! Now, since having the splenectomy, Dr. Martin says that I may have in the neighborhood of 15 years. This is of course an estimate as only God knows for sure, but I’ll take it! She is hopeful, as are the rest of us, that new ways to treat Myelofibrosis can be found in that time and progress is being made all the time. Just the other day a friend sent me a link to a news article stating that a team of Canadian scientists has found a way to turn a person's skin into blood. The method uses cells from a patch of a person's skin, their new method can create enough blood for a transfusion from a four by three centimeter (1.6 by 1.2 inch) patch of adult human skin and transform it into blood that is a genetic match. With the ability to create blood for transfusion from a person's own skin, the advance means someday patients needing blood for surgery or to treat anemia could bypass the blood bank and derive the necessary supply from themselves. Those needing bone marrow transplants could be particularly aided by the breakthrough, according to John Kelton, dean of health sciences for McMaster University. "For all physicians, but especially for the patients and their families, the illness became more frustrating when we were prevented from giving a bone marrow transplant because we could not find a perfect donor match in the family or the community," Kelton said. "Dr. Bhatia's discovery could permit us to help this important group of patients." Sounds pretty damn good to me!!! Way to go Canadia, eh?

With all this I find myself once again at a crossroads, the paths before me are as varied and unknown as ever they have been. It’s time to make some decisions, serious decisions. Where do I want to go? What do I want to do? Should I go back to work, CAN I go back to work? If so, what can I do and how long can I do it? None of these questions are easy to answer, at least not for me. I don’t think I’ll be able to work as a cabinetmaker like I was before, it was just too physical and I have lost too much muscle mass to do that kind of work. There is also the question of how much can I work and keep my disability income. I’d like nothing more than to not need it but… if I can’t work a full workweek and I lost those benefits, could I get them again if I needed to? I kinda doubt it would be very easy and that would be a mess, there ARE still bills to be paid. Please don’t misunderstand me and think that I don’t want to work or that my plan is to scam the man and lay about all day at Uncle Sam’s expense. The road to recovery is far from over for me and I have a fair way to travel to get there, if I ever really even do. The splenectomy was still only a bandaid, a rather effective bandaid, but ultimately still not a cure. The search continues for a bone marrow donor match so keep telling your friends and family that haven’t yet been tested, they could save a life!!!

Most of the previous text was written back in November. I have since been rather sick with the flu and dealt with some more depression. Not a very fun way to work up to the holidays. The holidays themselves were very well except that Sarah was infected with that vile flu bug the day before Christmas. Sheesh! FINALLY we caught a break after the first of the year and now we are gearing up to make 2011 the best darn year it can be for our family. We are trying to plan an extremely long overdue honeymoon to Ireland in April, the boys have been enrolled in a local martial arts school which specializes in medieval swordsmanship and knightly virtues. I see good things in their future as Connor has attacked his lessons with fervor and Kenyon continues to mature. I think some music lessons will be in store for all the kids as well as Sarah and I, some vacations, hiking, trips to the beach and maybe some whale watching! Why this very morning I went to Hearst Elementary School to help a friend who has started a book club to get the kids there reading. I sat in front of maybe 150 kids, parents and faculty and read The Little Engine That Could, all the while thinking how fitting a mantra that was for me. Those kids will never know how much the experience meant to me, not only to be able to share a timeless classic with them but also to stop and reflect for a few moments afterward on just what that story means. There is the lesson we learn about taking the time to help those in need, like the Little Blue Engine helping the train get over the mountain to bring all those toys, dolls and food to the kids in the town there as well as the lesson that if we put our minds to something and we stick to that, or persevere, we can do great things not only for ourselves, but for one another as well.

It also felt great to do something without the expectation of payment or reward, something done just to help a friend. I have been doing some research on how best to get back into the swing of working after such a lengthy struggle with a major health issue and one of the things that I have learned is not to just try to jump back onto the bandwagon but to work back into it gradually. I found suggestions like finding places to volunteer my time and work up from there, perhaps where there is not so great a commitment as being at a time clock at 9am and trying to tough it out for 8 hours 5 days a week. I think this was a great start and I’d like to look for more things that I can do. I must admit that I was more than a little nervous at first; you KNOW how vicious children can be, especially in such large numbers! They were easily tamed with some donuts beforehand and I’m certain they were well mannered to begin with. This will go down as one of my favorite things accomplished in 2011, I can’t WAIT to see what else this year has in store for me!

Until next time, stay warm, stay healthy and spread the love!